Of course, there’s no reason for anyone to reply to this but…
I’m 1% benefit (so it transpires).
With scoliosis, lower back pain and Meralgia parastheica, right leg (I think) - and I’m thinking the effect it has over the bones/joints, that’s just not good enough for me.
ER 8/8 PR+ HER2 - Low risk pathway.
Surgery and hopefully radiotherapy.
I think I’d call it a day at that.
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Interested as i may be making this choice to take or not but im of the thinking if its a very low % then its a no from me . Will weigh it all up though . @itsjustnotmyyear.
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If I went by predict I’d be between 1-2%. But I had a cancer type and receptor mix that is so rare that Ive not seen another case on the internet and Chatgpt agreed that it couldn’t find another case of it and backed up all my reasoning as to why it makes sense to ditch - in my case - tamoxifen. ER+ but PR - so less likely to work. Her2 positive but I was refused herceptin- so even more less likely to work as could promote Her2 growth, causing a worse situation. They still offered it, as its a blanket approach regardless of circumstances. Gave it 3 months, not worth the side effects, glad I’m off it, hateful stuff. I’d guess its similar for AI’s, and in your situation, with such low benefit for cancer, but pretty sure fire defficit for bone health that you are already compromised by, its fair for you to consider whether to take AI’s or not.
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AI? What is this?
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I think if there is a chance to prevent recurrence, it is at least worth trying. One percent is one in every hundred, that’s one too many in my opinion. I wish I had the scientific know how, to discover better solutions with less side effects and that all important 100% guarantee.
I’m about 9 months along and started to notice joint pain. At this point I’ll stick with it and hope for long term improvement. I see it as an important treatment, I’m not ignorant to the difficulties people experience but I am going to try, persevere and if need be stop.
Do collect as much information as you can the you can make an informed choice, about what is best for you x
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Oh should have said I have onset arthritis in my hips as well. Xray says it’s mild. In my world my hips ache.
I’m currently taking naproxen and Co codamol due to a major flair up. Trying to get this lot under control before radiotherapy starts.
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Aromatase inhibitors @casey2
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I can see why you would be reluctant. Aches and pains short term, can be tolerated to some degree, but having them like yourself over a longer and persistent period must be challenging. It’s understandable not wanting something that would add to it. Best wishes.
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On Predict 2 my benefit was 08.8% to 1.3% at 15 years . It’s lower on Predict 3 but I had a very early and rare form of IDC - tubular which is very slow growing and carries a lower risk of recurrence and metastasis than other cancers. I was offered Tamoxifen initially by my Surgeon - however my past medical history made me unsuitable for that so although he said he didn’t think it worth me having an AI I was then prescribed Anastrozole . After 5 miserable weeks of constant hot flushes a pounding thumping heart ( scary) brain fog and tears I started to adjust and felt relatively ok. … until the joint pains kicked in. At first it set off all my old injuries but after almost 5 five months to one extent or another it was everywhere and my hair was also receding . I had other health concerns as well too numerous to go into and I felt miserable and old and that the risks might just outweigh the benefits for me personally .
I think my case is a bit unusual though and it’s not a decision to be taken lightly - there were other avenues I could have explored ( and didn’t ) but I tried for what I consider to be a reasonable amount of time . My Oncologist had discharged me at this point and though I know she would have liked me to give Exemestane a go she seemed fairly philosophical when I said I felt I might not make the full 5 years . My Breast Team have been supportive of my decision , they approve exactly but my surgeon wrote in a letter to my GP that if I didn’t get on with it it would be reasonable for me to stop which I suppose was a bit of a get out of jail free card for me.
You never can be entirely sure you’ve done the right thing but make a decision you can live with. In your situation I would be worried but there are some people who really don’t seem to get any or just very mild side effects - I’ve met them xx
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AI is an aromatase inhibitor.
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Mine was a rare cribriform type, like tubular, slow growing grade1. Unlike all cribriforms seen, 0PR but Her2 +3. So rare, not found anyone with it. Ultimately, risk of recurrance unknown really as nothing to compare it to. Predict is not of much use for rare outliers.
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I wish I could say something positive to you about it. Sending best wishe.
I’m the same as you. Post polio, scoliosis and osteoporosis. My trunk muscles are very limited and suffer from nerve pain. Had surgery and radiotherapy and tamoxifen for 5 years. Not coping with side effects and been told to stop until see Oncologist next week. Afraid of risks of not taking tamoxifen.
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I’ve read lots about tubular - including one article proposing that women with tubular less than 10 mm should not be prescribed hormone therapy . Initially I wasn’t even supposed to be having an operation under GA or a lymph node biopsy as I’m on the SMALL trial and was randomised for VAE. The VAE failed but did get some of it then another 6 mm was removed during lumpectomy with clear margins .They think it wasn’t bigger than 10 mm so I’m just on the cusp. SNB was negative as well. I was strongly Er/PR + and HER2 - though so I’m rare but not as rare as you and it must be difficult given the medics don’t have a pathway for you but I imagine they must be very interested in you because of the rarity.
Like you i have extensive joint pain already caused by osteorthritis and several disc problems, take naproxen,amyltriptoline and paracetamol to help. I too refused the AIs.
My age 66 was definitly a contributing factor as I didnt want more drugs,
I just wanted to enjoy things without even more possible pain along with other things that AIs may cause long term.
Whatever treatment you choose to take, its your choice remember.
Sending hugs xxx
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I was told mine was a 2% difference in risk of recurrence so opted not to take it . I was ER+8, PR+8 and HER2+. Has a wide local excision followed by radiotherapy. I definitely was not given enough information or guidance at the time. My consultant was very dismissive. He mentioned chemo but then said he wouldn’t bother but seems most with HER+ are advised to have radiotherapy🤷🏻♀️
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Sue, you can ask for a second opinion.
I don’t know if that helps, or not, nor how easy or hard it is to get it.
I personally don’t need a second opinion.
What I needed was to be told everything about my condition, and that wasn’t the case. Luckily I can read letters to my GP as I have the NHS app. I would recommend everyone to have the app, then research using trusted sources.
The caveat here is it takes a while for the letters to appear, then says it was uploaded a week previously 
The oncologist copied me into her letter which I read on patients know best.
She knew I’d researched the Predict tool.
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Could you go through it with your BCN @sue2 ? After I stopped I had a wobble and it helped to talk it through with my BCN in clinic - she didn’t try to influence me either way mainly listened while I sorted my ideas out and answered questions I didn’t know the answer to . You could also speak to the Nurses on the helpline . Unfortunately when people deal with cancer day in day out it becomes routine to them when it’s anything but for us. Xx
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I’ve had bc twice 18 years apart . Ist was tubular grade 1 hormone receptor positive and back then it wasn’t deemed necessary to go on AIs . Fast forward 18 years recurrence in same breast multi focal so had to have a mastectomy . I’m now on Letrozole but take Magnesium for the bone pain . Please think it through before making your decision x There is a Facebook group for ladies endocrine therapy that you might find useful x
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Hi,
I decided against taking Tamoxifen, it improved my chances against recurrence by 3%, but I still didn’t want to take it.
I had my first clear mammogram in April.
I weighed up the pros and cons & for me personally at the age of 77, not overweight, reasonably fit, not prone to illness, I decided I would rather have my time not feeling ill.
I probably should have given it a try, but I didn’t want to take medication long term, not knowing if it was affecting my body in other ways.
I consider myself extremely lucky, I had a lumpectomy, an excision & 5 sessions of radiotherapy. I had no problems with the surgery, I recovered quickly, minor problems after radiotherapy, a rash & fatigue, nothing I couldn’t cope with. I haven’t been ill, so I didn’t want to risk side possible effects from Tamoxifen, time will tell whether I have a recurrence or worse, but it could still happen taking Tamoxifen, so I intend to just enjoy my life and not think about the what ifs & cope with it if it happens.
All the best.
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